Tag Archives: Feeding Tube Awareness Foundation

Day 6: Educating those around us

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With the growth of the internet and the increasing popularity of social media platforms as well as the plethora of blogs out there that cover a multitude of topics, the world has become a lot smaller and it’s easier to spread the word and work towards greater understanding. Our family has become adept at educating those around us about EGID, a necessity when even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture. As a quick aside, try living with anyone who is in the midst of an EGID flare and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness. T_2384403_orighe same is true when it comes to feeding tubes as sadly misconceptions are rife and the reasons behind a tube can be as complex and individual as there are stars in the sky. Even with children or adults living with the exact same condition, their symptoms and need for additional nutrition can be vastly different.

Of course, those of us who live with the reality of additional nutritional support and tube-feeding often have the best opportunity to educate those around us about it, but we can’t do it on our own. PINNT (Patients on Intravenous & Nasogastric Nutrition Therapy) here in the UK and the Feeding Tube Awareness Foundation in the USA do an amazing job of supporting families going through nutrition therapy, be that newcomers to the world of tube-feeding or those who’ve been doing it for years. They also provide tools and advice that can be effectively used to educate the outside world about the reasons behind this treatment and how to give easy-to-understand answers to the most difficult of questions.

Last year, M made a video for National Eosinophilic Awareness Week, which he used to help teach his classmates and the wider school not just about EGID, but also about his tube and, to be perfectly honest, I couldn’t think of a better way to help educate my community than sharing it once again:

Day 2: An even more energetic M!

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This is one of my favourite images from 2015: our own version of last year’s Feeding Tube Awareness week meme that I adapted using photos of M. Those photos were taken over an 18-months period and by picture 4 you can clearly see the improved colour and fuller cheeks of M’s face now that he was finally getting proper nutrition. After nearly 6 months being fed via his NG-tube, he had gained weight, had improved bowel function and was once again the cheerful, happy-go-lucky child that we had known him to be as a somewhat mischievous toddler.

Over the last 5 years, M’s seemingly unrelenting energy has confounded those surrounding him because M has never given up; has never let his EGID slow him down, even in the darkest moments. He has long since learned the lesson of “grin and bear it” because, quite frankly, the alternatives for him were unthinkable. M is a do-er. yourimageHe loves to run around and be on the go and into everything all of the time. I mean it. M just doesn’t stop, ever. He’s always given 110% to whatever activity he’s doing, even if it meant trying to finish a swimming lesson white as a ghost and with a temperature of 39.5°, or running the magic mile on the first day back at school after a week off vomiting and barely able to move from his bed or the sofa. Whilst you might often find G curled up in a chair or on her bed reading a favourite book, the only time you’re likely to find M doing the same is at 11pm when he’s waiting for me to come to bed before settling down himself, and even then you’re just as likely to find him playing his cello, or perfecting his dance routine, or building with his Lego.

We even managed a trek across Tower Bridge on our travels

We thought we had seen it all, but 2015 showed us just how endless his energy supply could be when he was being fed a balanced, nutritious feed that provided all the calories, vitamins and nutrients his growing body needed. No longer struggling with the anxiety of limited bowel function or working through the relentless chronic pain, M found the energy to achieve so much with his pump pack and feeding tube in place. He walked miles around London on our Shaun the Sheep hunt with no complaint of aching legs; he tackled and beat the challenge of learning to ride his bike unaided; and he continued to participate in the weekly sessions of Stagecoach that he’s loved for years, no longer needing to take regular breaks during the 3 hours training. We’re now 6-weeks into life without a tube once again and none of us knows what the future will bring. His year with the tube might be all that M needs, or we might see the return of it at an as yet undetermined point, but I don’t regret that year, not when I can see the improvements to M’s health and life and energy levels that it brought. His tube was never a barrier to his activity, but rather the boost he needed.

Feeding Tube Awareness Week – Day 1: Choosing to raise awareness

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7beb7940ed39bc80ce6cb39710abb740If anyone was going to describe the last decade of my life, the one indisputable conclusion they’d end up reaching is that it’s been anything but boring. Thanks to a pair of children who have thrown more than their fair share of life challenges into the mix, we’ve weathered more storms than I ever believed possible and, for the most-part, we’ve come out the other side still smiling and relatively unscathed. We’ve survived a lot of challenges, met a whole host of amazing people and learned a great deal along the way; and if I had to pick just one lesson that constantly resonates, I’d have to say that we now know to never take things for granted as they can change at the drop of the proverbial hat. Two years ago I wrote about our limited experience with feeding tubes and then, less than a year later, I found myself blogging about my brand new super-tubie. Another year on and the NG-tube has gone for the time-being and the only thing I can say with absolute certainty is that I have no idea if or when it will make a reappearance in M’s life.

The lessons that the last 12 months have taught us all have been huge and I have come to love and hate that feeding tube in equal measure. For the first time in his life, the reality of M’s chronic illness and multiple food allergies was outwardly visible and finally people understood from a glance that there was more to him than initially met the eye. The constant presence of the NG-tube opened up more conversations and opportunities for me than ever before and I’ve been able to share experiences, offer support and educate the wider community about EGID. M and his froggie friendWe all felt the benefits of that visibility to start with and I no longer felt the underlying pressure to defend the true extent of M’s illness and food allergies whilst my outwardly healthy-looking youngster was intent on tearing around practically making a mockery of every problem and pain we said he was suffering.

Of course, the flip-side was that ever-present tube. The one that there was no escaping or avoiding, no matter the event or occasion. Christmas, birthdays, performances and holidays, the tube was M’s constant companion and he became increasingly aware and conscious of the curious glances that were thrown his way by adults and children alike. His wonderful classmates and our village took it in their stride and quickly became so accustomed to it that M was never subjected to a second glance, but the wider world could stare until he disappeared from view. As well as the tube, we had the problems of M’s face reacting to the unavoidable medical tape and it took us several attempts to find a tape that didn’t burn his cheeks. Even when we finally found the best solution for him, at times he was left with red, sore and sensitive skin that only time tube-free could heal.

Looking back, 2015 was a year unlike any other in our family’s life, but I don’t regret a single moment of it. From that difficult decision to place the NG-tube and start M on an elemental diet, we have seen tremendous growth and an improved health that exceeded all our expectations. Most of all, we now have an opportunity to help raise awareness from the standpoint of personal experience and a road well-travelled, something that, believe it or not, I wouldn’t change for the world.